Women with autoimmune diseases such as lupus or rheumatoid arthritis are more likely to be misdiagnosed or receive delayed treatment than men, with their symptoms often referred to as “psychological.”
An online survey by British researchers found that it took women with an autoimmune disease about four years to get a diagnosis, while it took men between three months and less than a year.
This adds to previous research showing disparities in diagnosis between men and women with autoimmune diseases.
“Women in particular did not feel listened to, heard or believed by their healthcare professionals,” said Sydnae Taylor, a doctoral student at the University of Oxford in the United Kingdom and co-author of the study published recently in eClinicalMedicine.
Autoimmune diseases – including type 1 diabetes, multiple sclerosis, inflammatory bowel disease and psoriasis – occur when the immune system attacks the body by mistake. More than 23 million people in the United States have an autoimmune disease, and most of them are women.
Autoimmune thyroid diseases, which include Hashimoto’s, were the most common type reported by women in the survey. This usually causes fatigue, unexplained weight gain, and sensitivity to cold, among other symptoms.
Autoimmune diseases can affect anyone, but they are more common in women than men, according to the Federal Office of Women’s Health. For example, about 90% of people with lupus are women, according to the Lupus Foundation of America.
It is not clear why women are more at risk. Research from the Mayo Clinic has suggested differences in the microbiome, sex hormones and that women’s bodies produce higher levels of antibodies associated with autoimmune diseases. A 2024 Stanford Medicine study found clues in a molecule connected to the X chromosome.
Because many disorders share similar symptoms in the early stages—fatigue, dizziness, low-grade fever, as well as stress, anxiety, and depression—they can be difficult to diagnose.
Women and men have similar symptoms, but in women especially, “they develop over time, so it’s often difficult to recognize them early on,” said Dr. Saira Z. Sheikh, director of the UNC Lupus Rheumatology Clinic in Chapel Hill, North Carolina. Symptoms can appear during childhood and last throughout adulthood.
The survey was conducted through social media, patient support groups and community groups of underserved populations such as religious groups and the homeless population. It has been translated into five languages in order to reach diverse communities.
Participants shared data on symptom onset, number of clinicians consulted, and diagnostic errors. The data was then compared between men and women. Of the 6,607 participants, 91.2% were women and the majority of them were from the United Kingdom.
Misdiagnoses are more likely when symptoms are “invisible,” meaning they are not detected in a blood test or involve pain, fatigue and neurological symptoms such as tingling, Taylor said.
In these situations, accurate diagnoses rely on doctors listening and believing the patient.
“We should not assume that women’s symptoms are psychological just because initial investigations are inconclusive,” Sheikh said.
Gn Health
